Correction

Chad was kind enough to correct me that we're supposed to get 3 "inches" of snow and not 3 "feet"! Whoa, that would be a blizzard! Ha! I am a little sad though as this might be Carsten's last snow he'll see for a while since we're moving down south. Ummm, okay I'm over it now, I'll take the warm weather over snow anyday:) Happy Friday!

Friday!

Well I'm debating on whether or not to take Carsten to the doctor this morning. He was coughing all night long and has had a runny nose/cold for about a week now. I guess I'm just worried it's moving into his chest but I feel like what are they really going to do for him. Besides, I haven't seen the pediatrician since the "gymnastics" episode and I'm a little chicken to go in and face her:) So, I made a tentative appt for tomorrow morning and we'll see how he feels, but I have a feeling with 3 feet of snow we're not going to want to go in:) Carsten is walking all around the house right now on his push walker. He can go anywhere now and when he gets stuck he just picks it up and moves it! I have a feeling we're going to start having some boo boo's as we transition to walking instead of crawling. He still doesn't bend his knees very good and has a wide gait, he kind of looks like frankenstein:)

KKI called yesterday and the lady submitted the review for Carsten to do inpatient instead of the day program. The team is going to review it and we'll have an answer by next week. If this all works out, we could possibly be going in a few weeks. I know there is a shorter wait list for inpatient and I would be thrilled to do this before we move to Atlanta, it's all going to have to fit just perfectly though to work. If not, we'll just wait and pursue the Atlanta program. The problem with the Atlanta program is that it's in another Tricare region so we'll have to start all over with insurance and everything so I'm really hoping Baltimore still works out.

Please be praying for my friend Naomi. She is a fellow Army wife that lives in Atlanta and she has what sounds like some serious health problems. We are looking forward to being close to them and having friends, she also has a three year old son. So please pray that the doctors can figure out what's wrong with her and get her better.

Well I'm dragging this out because it's a really gloomy day here in Leavenworth and we're expecting snow tomorrow. Chad doesn't want tacos tonight so I guess I need to figure out another dinner plan:) Maybe Croissant pizza? Other than that I'm going to stay out of this crazy wind and wait for a phone call from the real estate agent!! Yeah, less than 10 days and we'll be in Atlanta looking for our home!

Everyone have a great weekend! Blessings!

Momma Bridges

KKI feeding program

Well I just got a very sad call from the feeding program in Baltimore. Our tricare insurance does not cover the day program anymore. She is going to look into more options for us like the inpatient program but not sure whether or not that will be covered or even indicated in Carsten's case. I'm sad but I know God is working it all out for us. Apparently Atlanta has a KKI sister program that is very similar to Baltimore. I am looking into this right now and we'll see where that leads. It would be much more convenient obviously to go to Atlanta and be able to stay at home at night. But, we will have to start over most likely as far as referrals, evaluations, and wait lists. I know God has a plan just right for us and it will all work out one way or the other and Carsten WILL eat! He is doing very good lately, still drinking from his straw (the most 8 ounces in a day) and eating his purees. He can eat oatmeal packets now too which has a little more texture to it:)

I feel like I'm back on the roller coaster ride from the hospital. Earlier today I was happy crying because Carsten was walking really good and now sad crying when I got the call about this:( But I'm hopeful for a better solution and trusting it will all work out.

Love,
Momma Bridges

Trip to NWA

The Bridges bunch is back from NWA. It was a fun trip! Thanks Mimi, Grandaddy, Gigi, Nana, Aunt Nae, and Uncle Boo!! Carsten had so much fun with all of you. I hope we can do it again soon. Maybe next time we'll be at the beach (only three hours from Atlanta!)

Friday fun day!

I'm glad Friday is here. Only three more days and I will be heading to Fayetteville to see family, a much needed trip at this point since Christmas. Carsten will be headed down with me and then Chad will meet up with us on Thursday or Friday depending on when he gets out of class. Carsten is in music therapy right now shaking eggs and singing with the guitar with Ms. Kay:) He likes music therapy and it's fun for him anyway even if it's not the most research based therapy:)

I'm also learning about hyperbaric oxygen therapy. They have it at his physical therapy place. It's basically a huge chamber they get in and it delivers extra oxygen supposedly increasing blood flow and subsequently neurological function. I'm still not sure about it but the mom I spoke with this week said that her child has made lots of progress with it and intensive therapy combined. They go for 5 weeks at a time doing intensive PT and oxygen therapy. We never learned too much about either in school, I guess because it's more non traditional therapy. But her son has cerebral palsy and she said that is how he learned to walk. So, it's something I'm looking into. They gave me testimonials of two parents with children with Down Syndrome that had great results. They said that it increased their children's vocabulary a ton. I'm not sure how much of the progress was just natural development and how much can be contributed to the oxygen therapy. I think in Atlanta though we'll focus on the traditional therapies since Carsten will be a little older. We'll do PT, OT, Speech, and feeding therapy of course.

I can't wait for KKI to call and say they have an opening, it couldn't come sooner. He's doing so well and I think the program could really get him to a point where he's off the tube. I told Chad I don't care if they call on June 12th the day we're moving and say he's in, we're dropping everything and going! I know it will all work out timing wise so I'm not going to worry about it. Maybe we can get all settled in to Atlanta and then go, that would be perfect since Chad will be on a lot of TDY during this tour (travel). Well that's about it for me today, I know boring blog sorry:) I'll be sure to take some pictures of Carsten while we're in Fayetteville and post them!

Have a great weekend everyone!

Oh, I forgot!! March 21st is National Down Syndrome Day! Some people have started a campaign to eliminate the word "retarded" from our vocabulary. They were talking about it on KLove and basically they said that even though people don't say it with a derogatory demeanor that it still hurts families that have children with disabilities. I'll admit, I used that word all of my life until I had Carsten. Only then did I realize how much it does hurt. I'm getting better about not using it now and I think the campaign is a great idea. So everybody remember Down Syndrome on March 21st and try to get out and tell someone about it.

Happy Friday!


Love,
Momma Bridges

C-man

Carsten is making leaps and bounds progress. I'm so excited. This morning he ate his whole banana and drank 4 ounces of whole milk!! yeah!!!!!!!!!!!!!!!!!!!! Though it took him a good while, 40 minutes total, he did it! He's slowly starting to drink more from a straw, I'm so surprised that he does best with the straw, but hey I don't care what it is. I'm going to start keeping a log and writing everything down so I can subtract and tube him less. The weaning process has begun! He just needs to start eating more solids, I'm going to ask the OT if we can focus on this now. I'm still scared to give him any solids but he does great with purees and I know there are kids out there that just eat pureed food with no tube. So, we're thrilled with his progress and hoping for a day when we won't need the tube anymore without getting ahead of myself, I need to still be patient I know. He's also standing up everywhere now from sitting and taking steps! I guess I can say he's walking now even though it's not very far. He's going to be running around the house grabbing everything in sight before I know it:) Go Carsten! We're so proud of you!! That's our fun Monday update. Hope everyone has a great week.

Laminin

Look, here's a picture of Laminin, the structure of all our basic molecular cells, it's shaped like a cross! So cool!

Church in Atlanta!

Okay so I'm so totally excited right now I had to blog about it. I just heard on the radio that Louie Giglio and Chris Tomlin are planting a church right stinkin' in Atlanta. We're moving to Atlanta in June! Put the two together, oh yeah!!!! I'm trying not to get too excited about it yet because obviously Chad and I haven't prayed about where we'll go to church, we won't even have a place until May. But ohh I'm still so excited. The website for the church is passioncitychurch.com. Apparently they met last week for the first time and the collection was able to bless a woman with a new van and provide funds to translate scripture for two people groups! And guess where the passion conference 2010 is, Atlanta!! I mean seriously, I'm so excited to be able to be a part of what God will be doing there in the next couple of years. God is soooo good! It's so funny you wonder why God is doing something like sending us to Atlanta, the LAST place we thought we'd go and then you hear about this, God is so cool!

Louie Giglio was the first person to actually encourage us after Carsten's diagnosis. We went to hear him speak in Little Rock and the sermon was all about how God creates human beings in their mother's womb and how our basic DNA material is called Laminin and the basic structure of Laminin looks like a cross, wow! Anyway, he went into detail in the sermon about how God even forms your chromosomes together! I will never forget how God encouraged us through him that night in the midst of wondering why was it all happening. So, all that to say I'm super psyched about being able to hear Louie more and maybe go there.

I better clean up before Chad gets home, all I've been doing is reading about the new church:) Have a great weekend everyone!

Love,
Momma Bridges

I think it's over

I think Carsten is FINALLY over his big D episode. I'm not completely sure so I don't want to speak too soon but it's looking better!! I had called the GI department yesterday and they told me to run his feeding tube 24 hours a day on a slower speed, there's no way I was going to do that. I just don't think he could handle being hooked up to it all day long, he'd be pulling at it and it would be a nightmare for sure. I feel so bad for families that have to use theirs all day long. I guess it's worth it though if it stops the reflux. Reflux is quite possibly the worst thing in the world.

It's going to be around 70 here today so Carsten and I are going to get outside, I'm so excited! Makes me more anxious for Atlanta. Yesterday Carsten drank some of his Elecare from the straw!! He's really catching on to it!! If I can just get him to drink even 4-6 ounces a day I can start weaning from the tube bit by bit:) I think I'm going to have to do this myself, I haven't got a lot of direction so far on how to do it but I know he's getting closer! We just have to work on solid food now, that's the trouble. But he's eating in his high chair and doesn't have to be in front of the tv anymore, that's huge!

I'm glad I can bring you all a positive blog today:) I'm feeling very positive myself and actually quite chirpy:) I wrote a note on Sarah Palin's wall on facebook this morning, that was fun. I just know she's going to read it and give me a call to help her with her 2012 campaign:) If our country even has another free election! ha. j/k (let's hope)

Okay, have a great Thursday, I know we will!

Blessings,
Momma Bridges

Going through the Big D

We are now going on day 6 of the "Big D" and I'm not talking about Dallas or divorce:) Yes I'm talking about Diarrhea! Poor Carsten. I'm sure you all want to hear about his bodily functions but let me tell you it has been pretty miserable. Not quite as bad as the 15 day one at Christmas though and no fever this time. Just never ending blowouts from both ends! I thought about taking him in this morning but what's the point? She's not going to do anything but tell me to give him Pedialyte. That is the ONE and ONLY reason I can say I'm thankful for the G-tube, being able to keep him hydrated during times like this. I have been running Pedialyte every night instead of milk on his night tube, I feel like he's losing weight but what can you do? His eating has gone downhill somewhat but I'm still getting a little in him by mouth everyday and the straw drinking is still coming along.

So that's what I'm doing today if anyone wondered, changing diaper after diaper after diaper:) Oh and also catching throw up from our 200 towel collection upstairs:) No really I was doing okay until two nights ago, the Kari vampire came out like it does from about 1000-2000am and I had a breakdown. We had changed his bed, diaper, and pajamas three times at that point and I completely lost it. Poor Chad, he was very sweet though and is so patient with my meltdowns. This one was sort of an anger then turned into sadness outbreak. I felt great the next day though after I got through my poor me and why is our life like this and why is God doing this to us session. I mean he's just sick, I try to keep it in perspective that things are just harder when he's sick, it's like that for any child not just mine. So, I'm better now and have worked through things. I just hope the Big D doesn't last much longer. God is so good to us and we have so much to be thankful for. I try to remind myself that it could be much worse than it is, it always helps when we go to OT in Kansas City and there are families getting out of the car with their children in wheelchairs or other things that make me say thank you Lord. Thank you that Carsten can move, that he can smile at me, laugh, play, and interact, thank you for the sweetest boy in the world even when he is sick:) Well that's it for me, back to diaper changing:) Have a great day!

Love,
Momma Bridges

Marriage retreat blues

We should have known better but we didn't listen to our instincts Friday night. I knew Carsten was coming down with something because he just wasn't himself, but we decided to try and go to our marriage retreat anyway. Yeah, that lasted about 30 minutes at the most. We got to the hotel and we already knew that it wasn't going to be pretty. Carsten was vomiting all in the hallway and at dinner, I'm sure people were thinking, there's no way I'm going to leave my kid in the nursery with that kid! We were going to try and just go back to the room and let him rest that night hoping he would be better on Saturday morning right about when I realized that I had forgotten his feeding bags for the night feeds, oops:) So, there we go packing everything up that took us two hours to pack just 30 minutes after we got there. Let's just say it was a long silent ride home. Nights like that remind us that our life is going to be different from others, at least right now anyway. Carsten is just really difficult when he's sick, his reflux is horrible and we need to learn to just stay home when we know it's coming on. So that was our "weekend retreat". Carsten is slowly getting better now, we think it was some kind of stomach bug or flu again. We did get to watch Fireproof last night which was pretty good so at least we did something for our marriage:) Anyway, that was our weekend at the Bridges household, hope everyone has a great Sunday!!

Love,
Momma Bridges